Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no such thing as spinal muscular atrophy type 1/2. I was originally…
Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I take my time and carefully examine the circumstances and craft well…
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me. Anxiety would greet me at the office’s main entrance and sit in the empty chair…
While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t blame them. After all, I’ve been wearing the exact same pair…
A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included in everyday conversations about disability. In that column, I shared my…
Making friends as an adult is hard. At least, it always has been for me. After all, I’m an introvert. I like keeping to myself. But friendships are important to my emotional well-being, and I cherish them deeply. However, once I graduated from college and started working…
Ed. note: This column was written in collaboration with fellow columnist Halsey Blocher for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at ”From Where I Sit.” It was another Friday night at the beach this summer, and I…
For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit organization as an adult, I have always been committed to making…
Even though I’ve been disabled all my life, I had never heard of Disability Pride Month until I scrolled past someone’s Instagram post last July. I guess that’s the beauty of social media: For every detrimental effect it has on our well-being, it can also serve as a…
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